End of life issues... can I ask some questions please?

[Bonobo]

I just found out that my mom's cancer is even more advanced than I thought. I thought maybe we had a year or two, but it looks like maybe weeks or months is all I have with my last remaining parent.

Can someone who has been there with regards to hospice facilities and end of life issues talk me through some tough stuff?

I have questions, I have grief. I don't know how to ask you all for help, but... jesus, in the last 2 years I have lost a father, a brother, a best friend and now my mom.

:cry: :cry: :cry: :cry:

[CaliforniaPeggy]

1. My dear Bonobo...

I cannot advise you, but you have my sincerest sympathies as you and your mom face this awful situation...

You have borne so much loss in the past 2 years......

:hug:

[tekisui]

2. You have been through more than I can imagine.

I lost my grandmother to cancer 5 years ago. Watching her die was the most painful, scary and empowering thing I have witnessed. She faced death as it was coming straight for her. I was terrified and she wouldn't let me go on about what I was going to miss. She wanted me, and appreciated most, when I was present. And, when I allowed myself to be present, my experience was fuller. I didn't dwell on what I would miss from the past or how it would be in the future, but just took the time as it was.

Those moments are what made the most recent memories I cherish with her. It isn't easy, you know that. It also isn't permanent, and you know that too. Be well, I wish for your comfort during this time.

[Bonobo]

7. I will try to remain present. You're right.

Thanks, brother.

[orion007]

16. My heart is with you. and your mother..

Have you been in touch with anyone from Hospice?
You stated a Hospice facility so I'm assuming she will be entering it at some point?
There is so much kindness and support within Hospice organizations so please don't be anxious about this aspect of her care.

My mom had Hospice care at home for the last year of her life, so here's a few suggestions.

It's all about your mom, her wishes,her needs and her wants, not what anyone else thinks should take place.

Insist that all who visit her or stay with her leave their personal baggage at home.
Respect her wishes if she doesn't want to see a certain person(s)

Life doesn't stop, keep interests going, her music of choice, ask if there's friends she'd like to call or write to.

Any and all of her favorite foods, deserts,drinks, live it up and she needs the calories.

My mom made a few very special phone calls to childhood girlfriends.

Hospice has different religious leaders on staff who are available,don't assume if someone didn't attend church that they wouldn't be interested speaking to one.

I think it's protocal if someone is affiliated with a church that that Pastor, Rev, etc visits those in Hospice care.

It is a sacred time, and there's no greater gift then being able to be with our parents.

You'll see your mom making new friends with her nurses, and aids.
My mother loved her hospice nurse, and in a facility your will have lots of very special ones.
Hospice care is very advanced today and you'll have a great group of people around you both.

You are there to love and cherish your mom and she you,

Please keep posting, there are lot's of us who want to help you both, and as all this unfolds,there will be many more questions.

My mother was given 2 days to live and entered a beautiful Hospice Room in a New England hospital
She was the 2nd person in their history to walk out of the Hospice room and go home.
She lived for another full year, and said it was the best year of her life, and she had a good life,

This is when I learned what "all in god's time" truly meant.


Blessings to you both.

[Bonobo]

19. THANKS! nt

[Mopar151]

20. Excellent advice.

Be sure to remain engaged with your own life - my Dad would not have had it any other way. If you have been an "eye on the world" to her in any way - keeping that up is a big deal.
My Mom volunteered for hospice at one point - they are much beter about maintaining dignity than a strictly medical setting.

[bemildred]

3. I just went through this with my brother.

We can go private if you want. What do you want to know?

[Bonobo]

5. It seems like there is a lot of "hospice care" and not much "hospice facilities".

Are people supposed to die at home!?

Things will be getting really, really, really hard. They already are. They don't want you in the hospital and she can't stay at home.

Why are there so few places?

And Medicare? Do I read correctly that they won't cover the room and board, just the services -IF we can find a place nearby. How do people afford it? I heard it might be $300/day!

Will they bathe her? Help her wipe at a hospice?

I found this place, but only 6 beds. What if it isn't available?

http://www.webharmony.com/fisherhome/index.html

[elleng]

10. There are nursing homes.

My mother passed on about a year ago, in Florida. Family paid whatever Medicare didn't cover; sorry I don't recall the break down. There were some at the home paid by medicaid, I believe.

Hospice will attend to all of her needs; they are excellent.

You have my greatest sympathy.

[Bonobo]

11. Thank you very much, Ellen. nt

[Hannah Bell]

14. If she's end-stage, she's priority. If there are beds opening, she goes to the head of the list.

Medicare Hospice Benefits

You can get Medicare hospice benefits when you meet all of thefollowing conditions:••••

You are eligible for Medicare Part A (Hospital Insurance)

Your doctor and the hospice medical director certify that you are terminally ill and have six months or less to live if your illness runs its normal course

You sign a statement choosing hospice care instead of otherMedicare-covered benefits to treat your terminal illness

You get care from a Medicare-approved hospice program*

Medicare will still pay for covered benefits for any healthproblems that aren’t related to your terminal illness.3


For more specific information on a hospice plan ofcare, call your state or national hospice organization (see pages 10and 12–13)

If the hospice team determines thatyou need care in an inpatient facility, the hospice medical teamwill make the arrangements for your stay.4

You can get a one-time only hospice consultation with a hospice medical director or hospice doctor to discuss your care options andmanagement of pain and symptoms.

You don’t need to choose hospice care to take advantage of this consultation service.

Medicare covers the following hospice services for your terminal illness and related conditions:
Doctor services
Nursing care
Medical equipment (such as wheelchairs or walkers)
Medical supplies (such as bandages and catheters)
Drugs for symptom control or pain relief (may need to pay a smallcopayment)
Hospice aide and homemaker services
Physical and occupational therapySpeech-language pathology services
Social worker services
Dietary counseling
Grief and loss counseling for you and your family
Short-term inpatient care (for pain and symptom management)
Short-term respite care (may need to pay a small copayment)

Any other Medicare-covered services needed to manage your painand other symptoms, as recommended by your hospice team


What Medicare Won’t Cover

When you choose hospice care, Medicare won’t cover any of the following:•
Treatment intended to cure your terminal illness

As a hospice patient, you always have the right to stop hospice care at any time and get the Medicare coverage you had before youchose hospice care.••

Room and board

Room and board aren’t covered by Medicare if you get hospice care in your home or if you live in a nursing home or a hospice residential facility.

However, if the hospice medical team determines that you need short-term inpatient or respite services that they arrange, your stay in the facility is covered.



http://www.medicare.gov/publications/pubs/pdf/hosplg.pdf

I had a cousin who was a hospice social worker. I believe they took some patients on a sliding scale or charity basis in their in-patient facility. Check with your state hospice office or check with the social workers at your hospital/medical facility.

[bemildred]

15. He died at home in his own bed.

I took care of him, I had help from other family members. That's the way he wanted it. The hospice people come around and help you with various things and show you what to do and provide supplies. It would be very hard to do it by yourself with no help, unless the patient could be left alone when you need to sleep. The actual work involved is not that hard, but you need to be shown what to do.

There are live-in hospice facilities for those who cannot or do not want to stay at home. My impression is they sort of prefer if you can do it at home, but will adapt their services to your particular situation, if you need more help, you will get it.

Hospice care is about helping you die, not curing you, so the orientation is completely different from a hospital setting. Generally, you need a doctors referral to get into a hospice program.

I have read that nobody is turned away because of cost. I don't know about Medicare, it was not an issue in our case, my brother had good insurance. I am sure the hospice people will be able to advise you about the financial aspects of your situation.

The nurses in our case came around to bathe and help with "bodily functions" etc, they are quite good.

My advice would be to go talk to these people soon. If they are not right for you, they may well be able to help you find what is right, and in any case you will be much better informed. Also you can discuss and begin to consider the timing of things, how long she can stay home, where she can go when the time comes, how things will work when she is in the hospice facility, etc.

I don't know why your mother cannot stay at home, but I would urge you to discuss it with the hospice people, and reconsider whether that is really so or not.

[orion007]

17. You need to call your areas "Council on the Ageing"

They are focused on being advocates for our elderly.
This is a government run service and free of cost to all seniors, ours here were wonderful.
You mom will get an advocate, they will help you make all these arrangements.
If she has a home she may choose to stay there and arrangements arethen made for aids,nurses,and if need be round the clock care.
Once a doctor puts someone under Hospice care, Medicare pays for it all, so don't worry.
Ask around there might be woman you or someone knows that do caregiving.
She'll also have a Hospice doctor that will oversee the visiting nurses,
I could go on and on, but now the first thing for you to do is call Council on the Ageing.
The name varies state to state, but itwould be similiar to the one I mentioned.

[Hekate]

21. They will help her in every way. If she is not a Medicaid patient, explore that possibility

It is the program for people with limited income and minimal assets, and my late MIL qualified when she was over 80. She probably qualified before, then but it was one of her daughters-in-law who not only saw the need but knew how to walk her through the process. She owned her own home, so apparently they don't count that against you.

Here's the first link you need
http://www.cms.hhs.gov/medicaideligibility/

After my MIL's stroke, my husband contacted the community college nursing program and hired some student nurses to take on the total care she needed (feeding tube, diapering, bathing). That only worked over the summer and holidays, though, because the nursing program takes a lot of study time and time at the hospital. One of her other sons lived with her already, and whatever else I may think of him, he took very good care of her at that point. I don't believe I could have done it myself.

In our area we have a Visiting Nurse Association that's over a century old, and they make home visits to help care for people, I think weekly. Locally, they are a resource for medical equipment, like hospital beds, that you won't need after your loved one is gone -- in other words, it's on loan to you. Social Services sent someone by as well to do evaluations. I have no idea what other cities have for resources, but it's worthwhile asking around.

Everyone I know who has ever used Hospice praises it to the skies. Some places have nursing homes, some I think just do home visits. Either way, they help the living (i.e. the family) as much as the dying.

Another potential resource is the Area Agency on Aging. When I googled for it I got Central Coast Seniors as one of my hits; the Central Coast is San Luis Obispo - Santa Barbara - Ventura counties. So the name will vary by region, but you'll get the info for your area by googling Area Agency on Aging + Your Town. Some of the access to info will also vary a bit: where I live, if I want a copy of the local AAA handbook of resources I can drop by my public library and pick one off the stack for free; but when my late mom moved to Orange County I had a terrible time trying to get something equivalent over the phone because they'd decided to put all the info online (I pointed out that many seniors don't even own a computer).

Bonobo, I'm so very sorry for your grievous losses, and now this. Please do keep posting, and do try to take care of yourself as well, so you don't burn out. I don't know if the above ideas help, but it comes with this :hug:

Hekate

[Jimmy Gunner]

4. So sorry

Experiencing the same thing here as relates to my mom. Just trying to keep her comfortable and read to her.

Best wishes. It's rough.

[Bonobo]

6. It is, sorry for you too. nt

[The Straight Story]

8. Not sure what all I can offer but my own experiences

And even they cannot fully help you day to day - but I can message you with my phone # and a way to chat with me online.

Been through a lot myself, and have lost some good friends to cancer (and many other issues).

Best I can do is listen and talk, and if you want to chat tonight - hit me up. Will be up for a bit.

[snot]

9. I'm so sorry. I hope you will be able to spend time

with her, but also alone with yourself, to give yourself time to feel and think.

I lost both parents within the last several years, and was glad I had some time to try to take in what was happening and also to say what I needed to say -- to try to tell them I understood things hadn't always been easy for them and that they'd done a lot of good, and I loved them. But in order to figure out what I needed to say, I had to spend some time listening to myself.

That said, this experience, like everything else, is probably different for every individual.

[madmax]

12. I'm so sorry for you

Can you speak to her doctor? He/She should have all that information to help get you through this.

:hug:

[donheld]

13. So Sorry

:hug:

[leftofcool]

18. My mom just passed away so I know how you feel

The best thing to do is ask her doctor to give her comfort measures, tell her how much you love her and then let her fly. She will take your love with her on her new journey.

[defendandprotect]

22. How sad for you and your Mom . . .

I can only offer my sympathies --

My Mom died a few years ago, but we were very lucky -- she was at advanced age --

and died peacefully -- great care in Ireland -- and with my sister and her husband

there every day!

Try to take care of yourself as well --

Best wishes --

[patrice]

23. My husband, Paul, passed-on 7 months ago. He was the 6th amongst my loved ones to

go beyond Beyond, including 2 of my sisters, my Father, and my first spouse of 30 years.

I know you know Bonobo, that it never gets any easier. I'm not sure it should. Joseph Campbell said something once about how when you're in free fall, you should choose to fall.

The pain is bitter, but nourishing, food, but it is not all that remains of their lives that have been encoded in you, Bonobo.

I wish there were more that I could give you, though you are the one who must do what needs to be done. I and your other DU friends are here for you.

Om namah Shivaya.

[Bonobo]

30. I sent you a PM. nt

[blogslut]

24. Don't forget to look into

...getting some grief counseling for yourself.

The weight of it all takes a toll.

Please take care.

[Bonobo]

29. Thank you for that. I will if I can. nt

[Subdivisions]

25. I'm so sorry, Bonobo. My you've had it rough lately. You are strong

and you must continue to find the strength to make it through this. Please tell your mother that we're all sending our best energy to you both in the hopes that you will find peace in this difficult time. Bless you both.

:hug: :cry:

[Bonobo]

27. Thank you, Subbie. nt

[Stinky The Clown]

26. Check your PMs

:hug:

[Bonobo]

28. You're gold. nt

[cali]

31. I'm so sorry. When my dad was dying, we were so lucky

to have compassionate care and a doctor who was willing to give him a LOT of morphine. The conversation we had with him about upping his morphine was coded, but he knew what were asking him to do and we knew the result.

[Bonobo]

33. I will hope for same.

Cancer is in spine and everywhere now. Very bad pain. Agonizing.

[ShortnFiery]

32. I'm so sorry to hear about that Bonobo.

I don't have advice but many here should be able to guide you. I value your participation here and you come across as a "kind soul." My warm thoughts and prayers are for you and those you hold dear. :hug:

[Bonobo]

34. Thanks, you have all been great help. nt

[lapislzi]

35. My heartfelt sympathies, Bonobo

I've been through this with both friends and family members. Some choose to die at home; some prefer the hospice environment. Hospice workers are among the most compassionate people I've ever known. I don't know how they can do it day in and day out, but they do their work with joy. They will comfort you.

And you must remember to attend to your own needs in the down time. Spend time with other loved ones, just holding hands, or listening to music, or praying - if that's your wont.

PM me if you want to chat.

Peace to you. :hug:

[livetohike]

36. I'm so sorry for your losses and the news of your mom's

cancer. I lost my Dad to pancreatic cancer in 2004. He never made it out of the hospital although we were being advised by the hospital social worker on hospice care etc. My Dad's cancer came quick and ended quickly to our surprise, but that is another story.

My best advice to ask the patient advocate, or whatever the hospital call it, at your Mom's hospital for advice. The oncologist should help too.

My Dad did not have a will, power of attorney, or advance directive when he entered the hospital. My brother asked a friend who is an attorney to come to the hospital to walk my Dad through all of this paperwork. It was heartbreaking to watch him sign this stuff from his hospital bed and also a good lesson to try to have all of this done before something happens.

I hope this helps in some way. My heart goes out to you and your family :hug:.